Hi Everyone,
I have no words for how much it means to me how you are all putting your
heads together for ZAch. I am a children's museum consultant and I had
appointments today or I would have written back sooner. Unfortunately, making
a living still has to happen even when I can hardly concentrate on anything .
. .

Anyway, Yvonne, what you wrote makes so much sense to me. When Zach used to
have seizures, his face would always get somewhat flushed first, they came on
when he was hot; either overheated from the sun or a fever.

Through out all this we have noticed the same thing that we tried to tell the
doctors, before the "psychosis" talk starts, his face gets flushed and hot,
then it is at it's worst.

Also, this may have nothing to do with it, but his blood pressure has been
higher lately, much higher than it has ever been before, approx. 170/90 at
times, and he is 15 years old, 5'4" and weights approx. 135 lbs.

He was doing a little better a few days ago, and we thought whatever made
this happen, the symptoms are depression and they said schizoid affective
disorder, so let them treat the symptoms, which they are with Luvox and
Seraquel, and we thought maybe the meds are "kicking in". I was still scared
because I thought and think, if I don't figure out why this happened, how can
I keep it from happening again??

Well, yesterday and today he is not so good again, so I am thinking the
medicines are not treating the true problem. We wanted them to put him back
on Phenobarbital again, because somewhat instinctively I thought this could
have been connected to his seizures of long ago, but they did not seem to
think that was a good plan.

He did have a cat scan, an MRI, and a 72 hour EEG at the University of
Chicago Hospital 2 weeks ago. U of C  wanted to put him on an experimental
anti-convulsant drug that would make him gain 45-60 pounds, and to me that
would be devastating to his self esteem, plus all the transferring from
wheelchair to walker that he does.  I said no. They never explained exactly
what was in his EEG report to recommend this, I have requested a copy of the
report. The neurologist just said there were some things there that could be
artifacts or could be something else, but he was not more explicit than that.

His MRI showed a great deal of periventricular white matter, which the
neurologist just said is CP. I do have that report, and it says on there that
clinical correlation is advised with these results, and I asked the
neurologist about that, but he just said that it is just CP.

I called Mayo Clinic, they said I could take him there if I would like, but I
am not sure if I should put ZAch through all that again, plus I don't know if
there is enough evidence of a neurological reason, rather than what the
psychiatrists are saying. What a mess!

I am trying to figure it all out, I really am.

Meanwhile, ZAch sounded miserable and anguished again today, and asked if I
could just come get him out of there. I think my heart is breaking.
Robin